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About GARD

The Genetic and Rare Diseases Information Center (GARD) was created in 2002 by the National Human Genome Research Institute (NHGRI) and the Office of Rare Diseases Research (ORDR), two agencies at the National Institutes of Health (NIH). GARD provides the public with access to current, reliable, and easy to understand information about genetic and rare diseases in English and Spanish.

Who can GARD help with information?

People who have rare or genetic diseases.

Parents, family members, and friends of someone with a rare or genetic disease.

Doctors, nurses, genetic counselors, other health care providers, social workers, and teachers who work with people with rare or genetic diseases.

Scientists who are studying rare or genetic diseases and need information for their research or for people taking part in studies.

Community leaders who are helping people find resources about rare or genetic diseases.

Members of the general public who want to learn more about a rare or genetic disease.

Where should I start my search for information on a rare or genetic disease?

Visit the Diseases section of our site to search for a disease. Each disease has its own Web page, where Information Specialists post the answers to questions GARD has received.

Check the GARD Web pages for the following and more:

Questions answered by GARD Information Specialists.

Links to resources where you can find more information.

Information about genetic testing and genetic services.

Scientific conferences that have been sponsored by NIH.

Organizations that provide information and support.

Information about research studies and clinical trials.

FDA-approved medications for rare diseases.

Where does GARD get information?

Information Specialists search the following and more:

NIH resources.

Medical textbooks.

Journal articles.

Web sites.

Advocacy groups’ literature and services.

Medical databases.

What if I can’t find the information I’m looking for?

Reliable information about rare or genetic diseases is often hard to find. If you can’t find the information you need on our Web site, you can call or write to GARD, and our Information Specialists will answer your questions.

How do I contact GARD?Information Specialists are available by phone Monday through Friday, 12:00 p.m. to 6:00 p.m. Eastern time (excluding federal holidays).

A feature article has been designed for use in newsletters by health-care professionals that describes the free services that GARD offers and lists GARD contact information. Newsletter editors are free to edit the article to meet their publication's particular needs.

Printed Resource Materials

GARD Information Center Brochure
Provides a brief description of the services that GARD offers and includes the full contact information for GARD.